Diabetes diagnosis and how participating in clinical research can help

Guys hospital research unit hosted a group of MPs and Diabetes UK staff for a tour of their facilities today. Guys has a world class research facility and does more for diabetes research than I could do justice to here. The number of dedicated staff supported by sophisticated (and expensive) machines gave me renewed hope that we can beat type 1.

I was asked to speak about my experience of being diagnosed and of participating in a clinical trial. I’ve written about my diagnosis quite a bit in the early days of this blog,  but with the benefit of hindsight,  I thought I could summarise my experience with a few pictures.

Diagnosis

Diagnosis

My new routine - calculating carbs, deciding dose and injecting!

My new routine – calculating carbs, deciding dose and injecting!

I was diagnosed with type 1 diabetes eight days ago. I can hardly believe it’s been such a short time: the sheer volume of information I’ve had to come to terms with has stretched time out.

According to the doctor, my body started killing off the insulin producing beta cells about two months ago. At that time I was blissfully unaware of the self-destruction going on in my body. I am newly married, and my wife and I were in the middle of moving into our first home. It was a hugely exciting time. I was doing a few running races, and starting to run long distances in the mountains. Feeling super fit, at the start of July I thought for the first time “I might just be able to run a mountain marathon”.

So whilst in that blissfully happy time of living in a new home surrounded by boxes and endless possibilities for the future, I started to notice a few changes. I was a bit slower on my run into work and my legs were taking days to recover. Over a couple of weeks I developed a raging thirst that was almost impossible to quench. I was also vaguely aware of losing a bit of weight.

Initially a huge appetite combined with moderate weight loss seems like a dream scenario! But I quickly became worried. It was les than two weeks ago that I was running to work feeling knackered, remembering the image of my ribs clearly visible in the mirror when brushing my teeth, and starting to let my imagination run wild. Did I have worms? Maybe. My wife, Emily, is a manager in a hospital working in cancer care. I knew from her that sudden weight loss is a flashing red light for cancer. Whilst plodding along, I tried to work out whether my life insurance would be enough to allow her to continue paying the mortgage. I also had the morbid but comforting thought that if I was going to die, at least I’d lived life to the full and I couldn’t regret not having done anything!

Whilst telling myself I was clearly mental, I decided to go straight to the gym at work and weigh myself. 67kg. I’d lost 5kg (almost a stone) in three weeks and was as light as I’d been since adolescence. Crap. I walked straight into the doctor’s office and made an appointment.

The rest, as they say, was history. Two days later Emily and I found ourselves sitting in London bridge hospital opposite Dr Powrie hearing that I almost certainly had type 1 diabetes. Yes that’s the bad type, he said, I’ll be injecting myself with multiple shots of insulin every day for the rest of my life.

My first reaction was relief. I had been diagnosed. It wasn’t cancer and I was going to live! I also had no idea what diabetes was other than being aware that there were lots of charities raising money for it and that it was a big problem because all of us eat too much these days.

Emily and I were planning to spend the weekend in the mountains in France. It was midday on Friday: four hours before we were due on a train to Gatwick. We could see Dr Powrie doing the sums. Would it be safe for me to go and could he get all the tests done in time? We did go, after I had been given a crash course in how to give myself a once daily injection of insulin to stabilise my dangerously high blood sugar levels, and after being given a big book about “type 1” and a kit to test my blood sugar. Oh, and a doctors note to explain why I was about to carry all these needles through security. A month ago I was winning a running relay race and now I was a fully certified diabetic!

Diagnosis